Monday, June 20, 2016

I was an Army brat, and so we bounced around a lot when I was a kid. I went to three different high schools because of my dad's job. I don't think anyone can do that and not be a little bit of a brat. For two-and-a-half years, for what was the end of middle school and the first half of high school for me, we lived in Orlando.

Orlando.

I was 15 when we left, so I didn't know much about nightclubs (a little, but not much). It was a place of Disney (the scene of even more heartache last week), and of short drives to the beach, and -- if I'm being totally transparent -- the backdrop to one of the more difficult times in my life until cancer. I was a 14-year-old girl who found my place with the wrong crowd, skipping school regularly and threatening to leave my family for my much older Puerto Rican boyfriend. It is a place without many fond memories for me, somewhere I try not to think of too often.

And yet.

I don't keep in touch with anyone from that time, but I still checked the victim list from last Saturday night's atrocity to see whether I recognized any names. Most of the dead were my age or younger. I didn't know anyone of the 49 victims personally, but I still grieved for such a grotesque loss of life: for the 2-time cancer survivor mom who was dancing with her gay son and took bullets for him, for the 19-year-old from Arizona starting a new life in a new town, for all of them.

This isn't about me, or my memories, or my sliver of grief compared to what those victims' families and friends must be feeling, compared to what the LGBTQ community must feel. My friend Aaron wrote that he is having nightmares about being shot in a bar. He doesn't feel safe. He can't sleep.

This is not about me, and yet it's about all of us.

I had an easier time talking to Quinn about why we can't have another baby -- because "mommy got really sick when you were little" -- than I will have when it comes time to talk about why tragedies such as Sandy Hook or massacres like what happened in Orlando keep happening in our country. On Twitter, one mom said she had to tell her kids, they deserved to know why they were having lock-down drills at school. I dread the day I have to strip away Quinn's innocence even more than I already have.

This mass-killing wasn't just about our shitty gun laws. Or about a homegrown terrorist claiming allegiance to ISIS to mask his own cowardice. It was also a hate crime against a particularly vulnerable community that has seen more hatred than most. As my friend Beth put it:

My social media feeds are mostly one-sided, filled with calls to change our country's gun policy (a vote for some changes are happening on the Senate TODAY, but are unlikely to pass given the political climate in Washington right now), and filled with support for the LGBTQ communtiy. In a sense, I have self-selected to be sheltered from the hate and from whatever nonsense Donald Trump is spewing at any given hour.

But none of us are immune to attacks like the ones in Orlando, Sandy Hook, San Bernardino, Aurora, or Charleston. None of us are sheltered from that. We are no longer safe in our schools, our movie theaters, our houses of worship, our night clubs, or at our jobs. How's that for freedom?

I don't usually get political on here, but enough is enough. I can't on the one hand have this space where I have a voice that people actually read, and on the other not speak up when something seems so intrinsically wrong in our world. I had to talk to my son about cancer, hear that big scary word come out of his little boy's mouth, tell him over and over again why I have to have scans that prevent me from being around him for hours at a time, and crush his sense of security that his parents will always be okay.

I do not even one iota want to also talk to him about how evil some people in the world are, how some people hate others for the color of their skin or for who they love, but especially how as a country we watched as 20 six- and seven-year-olds were gunned down at school, and a Congresswoman and her constituents were shot in a parking lot in front of a grocery store, and then another 49 souls massacred while they were DANCING, and we DID NOTHING. Let's do something. November is coming.

Friday, June 3, 2016

From left to right is Sheryl, my friend from college JT, me wearing a reminder sash that someone is diagnosed with breast cancer every 3 minutes in this country, and Ginelle, just after finishing our first Avon Walk in Santa Barbara in 2012.

I was on a training walk with my friend and team co-captain Ginelle a few weeks ago while visiting her in San Diego. It was Mother's Day, and our conversation ran the gamut from our kids' friendships and education in public schools to taking care of our mental health to the upcoming election, god help us.

This is how these types of walks tend to go when you're on the trail with a woman who has seen you at your literal worst, who has filled your freezer with homemade chicken pot pies and made pureed organic baby food for your 8-month-old, whose friendship has grown out of an openness and willingness to talk about issues that sort of surprised me when was first getting to know her.

Several miles into our walk, she said to me, "You know, I've been thinking about what the beast means to me." At first, I didn't know what she was talking about. It took me a second to catch up. Then it dawned on me. We call our team "Team Booby & the Beast."

"You mean, beyond cancer?" I asked.

"Well, yeah," she said. "Since you're doing better, it's taken on a bigger meaning to me. It's not just about your cancer or anyone's cancer. I think of it almost as the struggles we face as women. The burdens we carry, particularly with the election we're facing. Don't get me started on that."

I did get her started on that. We talked about Trump and the setbacks his presidency could mean for women. We talked about her daughters and my son and what we want them to know about their bodies, their abilities, the people they share this world with, and how to teach them respect for all of it. We talked about women who work, and women who -- like us -- stay home with our kids but used to have careers outside of motherhood. We talked about how lucky we are for the healthcare we have. We talked about privilege. And the disadvantages that still exist for women.

Recently, in two separate posts on social media, I was brought to tears about the struggles women still face in our society, not to even mention other societies. One was about a book on evolutionary biology with contributions from some of the top experts in the field, which failed to include a SINGLE female voice, even though I know plenty of women scientists and I am not even one. Second was this video that just speaks for itself about where women are in the world today.

***

This weekend, I am in Chicago with Ginelle and seven other teammates -- men and women -- to walk in my fifth Avon Walk, 39.3 miles over two days to provide funding for both research and underserved communities affected by breast cancer. I am pinching myself that I get to do this, that I am still around 5 years after my diagnosis, that we have so many supporters we have raised more than $32,000 and are currently ranked third for team fundraising in all of Chicago. I'm a little proud.

As I was packing for our trip, Quinn turned to me and said, "I can't wait to see you walk in Chicago, Mom!" I was surprised by the tears that poured out of me. I walk for him, after all, and this is the first time he'll be around to cheer me on. I pulled him in for a big hug and wiped the wetness from my cheeks.

Cancer, specifically metastatic cancer, will always be my beast. It is the thing against which I rail -- in whatever small way I can make a difference -- until my friends stop dying.

And I love that my son gets to see this side of me. He is old enough now to understand a bit of what it means to give back, to do something greater than yourself, to start to understand how breast cancer changed our lives. Earlier in the day, he had asked me if everyone in the world knew about the Avon Walk.

Ha. Not yet. Not even everyone knows about metastatic cancer, but we are working on that.

***

A number of patient advocates and friends of mine are also in Chicago this weekend, gathering to share their stories and insights with researchers at ASCO, the American Society of Clinical Oncology's annual meeting. I wish I could do both. Instead, I will be checking my Twitter feed regularly for updates on precision medicine, immunotherapy, advances from the Broad Institute, and quips from the brilliant women I get to call my friends.

Welcome

Writing about my journey at the intersection of metastatic breast cancer and motherhood. Diagnosed with Stage 4 cancer at age 32 and when my son was just five months old, this is the story of how I've learned to take life one day at a time -- through treatment, potty training, and, eventually, recovery.